I have hesitated in sharing my son's story with Crohn's Disease and the success we have had with FMT (fecal microbiota transplantation)
until now because I didn't want to do so prematurely.
My son is 15 years old. To protect his privacy, I will call him Jake, although that is not his real name :-).
Jake was diagnosed with Crohn's Disease a few days before his 13th birthday. It was widespread ulceration, inflammation and infection throughout his duodenum, terminal ileum, ascending colon, descending colon and rectum. It was a "gut-wrenching" time for me as a mother to an only child, especially after being told how very serious this disease is, how extensively he had it, that he would have it for the rest of his life, and probably do poorly in the long-term because he was so young at diagnosis.
I was worried sick with the long term consequences of my son taking immune-suppressive drugs (in his case, Imuran) - on the other hand I was terrified of the consequences of Crohn's Disease and felt we were between a "rock and a hard place". I cannot begin to put into words just how heartbroken and helpless I felt, but I am sure that any parent who reads this will understand.
Professor Tom Borody was recommended to us by a family friend as being an outstanding gastroenterologist. Unfortunately he was unable to treat Jake until he turned 14 as he was a paediatric patient, however tests he was able to order showed that Jake also had a strain of c-diff (clostridium difficile) - it was not the worst strain, but Prof. Borody felt that we needed to get rid of that first. It was what he called a "super infective".
Within days of his 14th birthday, Jake had a gastroscopy and colonoscopy. The Imuran had certainly helped to take care of the crohn's in his colon - however his terminal ileum was still swollen, inflamed and pussey. His duodenum, still had some crohn's-like ulcerations. Prof. Borody recommended FMT
to kill off the c-diff and we proceeded to have suitable family members tested as potential donors. Jake began a three week course of oral vancomycin to weaken the c-diff and then in April 2012 had his first FMT via colonoscopy- his terminal ileum was still very inflamed and swollen. I continued to administer FMT treatments to Jake at home and his 14 year old cousin was the donor. We also continued his Imuran.
A remarkable and unexpected bonus to having the FMT was that acne that had plagued Jake for the past year and a half had completely disappeared 7 days after treatment began. It has never returned!!
In November of 2012 Jake had a colonoscopy and endoscopy. To Prof. Borody's surprise, Jake's colonoscopy was perfect - the terminal ileum looked normal, as if there had never been a problem! The only trace was one single tiny erosion in his duodenum. There was no trace of c-diff either!
As advised, we reduced his Imuran and gradually over the next few months. Jake was completely off his medication by March 2013, so as at the time of writing, it's been almost five months. Jake is growing tall, his appetite is huge (perfectly normal for a healthy teenage boy) and he is putting on weight appropriately for his age. I still do top-up FMT treatments every 3 to 4 weeks - it's difficult to know exactly when the right time to stop is - in total he has had well over 115 treatments. Prof. Borody says that Jake needs to develop his own microbiota.
I do not know if FMT offers a cure for crohn's disease - but I do know that there is no way my son would have been able to sustain any remission without medication prior to this as we had tried a couple of times to reduce his Imuran but both times his symptoms came back within two weeks. What I do know is that FMT has tremendous potential for Crohn's and other diseases and definitely needs further studies. I also have to stress the importance of stringent donor testing.
I will keep you all posted in the months ahead of Jake's progress, but thus far, as a mother, I cannot be more delighted with how well this has gone. I am also so incredibly thankful for Prof. Tom Borody for being one of those scientists who dares to think "outside the box". It is because of doctors like him that medicine advances instead of remaining stagnant. It is because of him that Jake's future is looking good instead of bleak and that I can cry tears of happiness and gratitude instead of despair.
(Please click here to read part 2 of "Jake's" Story - November 2013 (One year later) - Colonoscopy/Gastroscopy showing no sign of Crohn's Disease whatsoever - NOT even in his duodenum!)